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2024-06-14 12:39 Archive Changemakers

I heard on the phone: "Doctor, my Vartkez has passed away. He left so peacefully after what you said." And we started crying together.

Interviewed by Ksenia Pominova, PACED.

Narine Movsesyan, anesthesiologist, teacher at the Yerevan State Medical University, specialist in palliative care and pain management, and international leader in the Palliative Care Leadership Development Initiative, Cohort II, shared how she repeatedly left and then finally returned to palliative care, how this speciality is currently being taught in Armenia, and why she believes women will save the world.

Version in Russian you can read by following the link

"What kind of speciality is this?! Only old people deal with it, I won't do this!"

Ksenia: Narine, thank you for agreeing to answer a few questions. Could you tell us how you came to palliative care and about your journey?

Narine: With pleasure! My path was very unusual, though very logical. But it was unusual for me because of my temperament: I am generally an anesthesiologist, a resuscitator, a fighter, a savior — all of that… And suddenly! I met with Grant Karapetyan (former head of the Association for Pain and Palliative Care), who was the first to start this movement. He told me in a private conversation that there was such a service. This was in 2002.

Ksenia: So long ago! More than 20 years ago!

Narine: Yes, more than 20 years. We were two pioneers, two trailblazers — Grant and I. I think he felt that he was alone and needed someone else. He explained to me everything about palliative care, but at first I didn’t quite understand what it was. I had spent my whole life in the operating room, and the thought of someone dying and us doing nothing about it was very strange to me.

Ksenia: You were on the opposite side then...

Narine: Yes, absolutely on the opposite pole. Grant told me about it, and it somehow stuck with me. He clung to it, saying, "Let's do this together!". I said, "Okay." At that time, a document by Vvedenskaya (Elena Stanislavovna Vvedenskaya — an oncologist and palliative care physician) was published — recommendations from 2003 on how palliative care should be established, what it includes, its principles, and so on. Grant said he had an English version of this document.

Ksenia: Did you know English?

Narine: No, this was 2002. I was studying with my textbooks, which had Russian synonyms everywhere. I was a Russian speaker, and knew Armenian not very well, at a household level. Everything was in Russian, the family spoke Russian. And Grant said that the document needed to be translated into Armenian. "Will you do it?", he asked. How could he ask me such a thing?! I am a passionate person; I said, "Yes!" And my torment began. I translated the text from English to Russian and then from Russian to Armenian. Everything turned out awkward, it was impossible to understand at first. And I had to learn two languages simultaneously.

Ksenia: Wow!

Narine: I was forced to do it because I said I would. And I did! Then in 2004, there was a seminar on palliative care in Salzburg, and Grant said, "Apply!". I went to there.

I'm ashamed to say this now, but back then I thought: "What kind of speciality is this?! Only old people deal with it, I won't do this!" I was 40 years old, 40 something. And there were women about the age I am now. But I still became interested and began to understand what they were talking about.

"There was absolutely nothing. And we just started teaching each other. And we went to doctors like missionaries."

Ksenia: Was there no training back then?

Narine: Absolutely nothing. We even had a case later. I had been training doctors for a long time, but I had no certificate! Many times I appealed to the ministry with a request: "Open this option that if a person 'brings' a speciality to the country, 'teleports' it, give a certificate or specification." Nothing came of it. And we just started teaching each other to make this certificate. Fantastic!

Then, since I worked at the medical institute and there was a question about training, and I already worked at YSU (Yerevan State University), I also started teaching (palliative care). So I got involved in this.

Then a movement began in Armenia. The idea of palliative care started spreading among specialists, lawyers, and then the ministry workers — they became very interested. Suren Krmoyan was then the deputy minister of health, a very good promoter, very helpful.

On the other hand, if it weren't for the Open Society Foundations (OSF), we wouldn't have achieved anything. They took on all the funding. Training, trips, document development — it was all with their help.

Initially, everything was done with the help of NGOs. There was a legal clinic where I dealt with patients. I figured it all out, and gradually the ministry also started meeting us halfway. But only from 2010 to 2018, we had a new minister every year.

Now it's more stable, today's minister (Anahit Avanesyan) is more open-minded, it's easier with her, you just need to explain why and how. She is ready to listen. In general, it was a long road. And this serpentine path I showed you (in the webinar presentation) is not for nothing. When you just go uphill — it's already hard, and when it's like this "serpentine"...

Ksenia: And there are few of you!

Narine: There are few of us, and there is resistance — among doctors and society. Society does not understand what it is. Even the medical community did not understand. We gradually started to change this mentality bit by bit, explaining. I talked about it from every tire, and not just me. NGOs also constantly organized actions, round tables, and so on. Everything went in parallel.

Ksenia: If we talk about the dynamics of palliative care over the past 15 years in Armenia, it seems to have been quite intense?

Narine: More than that.

Ksenia: Now I know you will have a mandatory health insurance reform. What changes will there be in palliative care?

Narine: We always talked about it being a non-profit education; we can't make money from it. The state should take care of very seriously ill patients. Together with Violetta Zopunyan (Head of the NGO "Center for Law Development") — a high-class lawyer and specialist in medicine, and Suren Krmoyan, we promoted these legislative acts. They initiated it. They were three people working on it.

Ksenia: Where are they now?

Narine: They are still involved in this work. We always postpone a lot; we are a country at war. We have to survive — not care about the quality of life. At the same time, we live in parallel; there is great strength and potential in the people.

When the conversation turned to how the state would care for patients needing palliative care, I said there is a gradation: palliative care and hospice care. Worldwide, hospice care is covered by state insurance. Now we really hope that such care will be included in universal insurance here as well. Thanks to the work of Violetta and our efforts, hospice care will be covered by insurance. Can we include all patients in it? Of course not. Palliative care lasts longer from the onset of the disease.

Ksenia: How do you determine palliative status?

Narine: In hospice care, there are criteria for the expected life expectancy. Based on a specific scale, we determine how long a person has until the end. If this period is less than 6 months, they fall under hospice care, which ensures the quality of dying, not living. This is a big difference. I always try to explain that the quality of dying is also important. Hospice is specifically about the quality of dying.

Ksenia: Yes, "Life for the rest of life," as Nyuta Federmesser says… Who else helps you?

Narine: Thanks to the openness and work of Violetta and Suren Krmoyan, we advanced the idea of including hospice care in insurance. Suren Krmoyan is now in another department, but still constantly supports us. With the Open Society Foundations, there were difficulties, the work was interrupted, but they also helped us to the end.

Ksenia: Narine, tell us what palliative care education is available in Armenia now?

Narine: We realized that we could not promote this specialty without staffing it. Because anyone would come in and do whatever they wanted. We realized that we needed to educate people. Now we have quite a few specialists who have gone through our training. It's hard to say how many will stay in the specialty, how many will leave, but a certain orientation is given to a person.

Initially, we went straight to the doctors as missionaries. We started to convey this knowledge to them. We began to travel to the regions of Armenia and work with doctors everywhere to cover all regions. We reached everyone. Usually, the first stage was — explaining what palliative care is, why they need it, and why it should be known to the doctor.

Ksenia: Is it difficult?

Narine: Yes.
Ksenia: Are there specialists hearing about it for the first time?

Narine: Absolutely, it's a very specific specialty; they don't even perceive it.

Ksenia: Is this topic covered nowhere in medical school?

Narine: We had such battles (in the institute) about this. I always say that we need to write “palliative care” to fit it into the field of medical specialties. They changed "palliative care" to "palliative medicine”. But this is a very broad term that covers a lot under the name palliative medicine. I couldn't overcome this obstacle.

Both the institute's leadership and the ministry agreed that people need to be educated about palliative care. We decided first to educate primary care physicians and then all those doctors who want to get this specialty.

Ksenia: How can a doctor get it?

Narine: For primary care physicians, we have a short course of improvement that lasts 32 weeks. We teach the basics of palliative care and all symptomatic care.

Ksenia: Is this happening now at the institute?

Narine: Yes, at the institute. Before they accepted all this, we worked independently with the help of OSF, organized courses, and directly transferred our knowledge to doctors on the ground.

Now at the medical institute, there are two types of courses: one short — for those who graduated from the institute, it's postgraduate education; and the second — is a specialization that lasts longer, 4 months. We long considered and thought about the terms... A third of this course is theoretical knowledge, and two-thirds of the course is at the bedside of the patient. In 4 months, you graduate as a palliative care physician.

Ksenia: Where does this take place?

Narine: With us. I usually lead the patients; if not, they go to oncology or places where there are patients.

Ksenia: And how do you train nurses, Narine? Do they also get a qualification as a palliative care physician?

Narine: No nurses. Only doctors. Nurses have secondary-special education.

When it came to training nurses, I did not change the course and maybe it sounds harsh, I did not "simplify" the course to make it easier for nurses. I taught the same course for both doctors and nurses. They need to speak the same language, understand each other, be a team, and not have this subordination and hierarchy because in palliative care, they are equal.

Ksenia: Nurses play a huge role!

Narine: Yes, huge. Sometimes more important than doctors. I took such pleasure working with nurses. This course coincided with the COVID period. We had about 20 doctors come to the course. I conducted the first part of the course and then moved to teach online. 43 nurses came to the course! 43!

They had such a colossal experience, it was more pleasant to work with them. There was no such snobbish attitude as with doctors: "What kind of speciality is this?"

I am guilty; I also went through this!

"You have to talk about it wherever possible"

Ksenia: In limited conditions, what do you think plays a more important role — training local medical specialists or creating informational resources for patients and their families?

Narine: Both. People need to understand. Do you remember I showed you the street actions? I was standing by this panel that talked about pain relief when a young man approached me and said, "Are you promoting drug addiction here?"

I explained everything to him very calmly and patiently, and then he said, "Ah! Now I know, I understand." It's very important to explain. He won't come himself and won't allow a relative to come until they overcome this in their heads.

Ksenia: Surely very few people in Armenia know what palliative care is. And that's normal; it's something we live with. What can NGOs or specialists do to tell people about palliative care? Why is it important? And can some stereotype be overcome: "I will die quietly at home"?

Narine: Look, I am so ancient that I can refer to Lenin, who said (Narine lightly imitates Lenin's slight lisp): "Use any platform to talk about the revolution!"

You have to talk about it wherever possible. Television, billboards, films, social videos... We thought about making some film. In our presentation, there is a link to a clip on YouTube about a woman who received pain relief. Celebrities can be involved, but money is needed for this. Current celebrities don't seem to think much about it...
Ksenia: They also need to be told!

Narine: Yes. Somehow the population needs to be more humanized...

I didn't understand all this either. I am an active, radical person. An anesthesiologist without fear or reproach. I left the specialty (palliative care) several times. I never did therapy because I can't wait. Did it — here and now!

To those doctors who come into this specialty at my age or a little younger, I say: "You can extend your professional longevity by becoming a palliative care doctor. Why? Because by this age, a person gains knowledge, understanding, life experience, humanity, compassion, communication experience, maturity, and patience." I wanted to have all these qualities. This is necessary to listen, empathize, and endure...

When I was finishing the Palliative Care Leadership Development Initiative Cohort II, this "incubator of leaders" in palliative care, there were only 43 people from around the world. We were taught to promote the topic of palliative care. We were coached by those who worked with American senators, who wrote books on leadership. And all these people who were there and are now at the top of global palliative care were my mentors.

Ksenia: Was it like an MBA for leaders?

Narine: Yes. At this training, as a completion, we all told our stories about what brought us to this topic. My story was like this. I had no idea I could end up here. I wanted to deal with pain as an anesthesiologist; it was interesting to me. Through "pain," they dragged me here. And several times when everything was going very tough, I left. I have very little patience. It was hard for me to explain all this to ordinary people, non-doctors.

At that time, I had a patient; I went to his home. He had lung cancer and metastases in his head. He mumbled; there was almost no contact. Somehow, he explained to me — it hurts, it doesn't hurt. He was very close to the end; I was providing him with hospice care.

His wife called me all the time and said, "Doctor, you know he is in pain."

In palliative care, there are two paths of death: one is heavy — with delirium, groaning, and so on. You don't understand "pain or not pain" if you are not a specialist. You need to be a specialist to assess the condition. And the second path is easy; a person simply fades away. My Vartkez was going the hard way. I told his wife, "He has no pain — I understood this indirectly — he is just leaving heavily."

One day, when she was having a hard time and he was having a hard time, she called me about 20 times. The last time she called was at one in the morning. I looked at the phone at night and just clenched my teeth — "to take or not to take?" But you need to answer normally. She says, "He is bad, doctor, he is in pain, maybe something..." I tell her, "My dear, it's not pain; he is leaving so heavily with you. Do this, do that..."

At five o'clock, another call. I was already furious. But of course, I picked up the phone. Now I'm saying this, and again, I have a lump in my throat... She says on the phone: "Doctor, my Vartkez has died. I am so grateful to you. He left so peacefully after what you said." And that's it. And we started crying together. And I understood...

You see, when you are an anesthesiologist, you return a patient back to life; you don't have a feeling that you are doing something... "unclear." And here... A person still dies (Narine cries). Sorry, I usually hold back very well... I realized that this is just my mission. The mission is to share my knowledge, my experience, and treat patients. And so I stayed in this speciality.

My last name is Movsesyan, which means Moses. Moses. It's not for nothing either. I always thought, "Lord, why did you bring me here?"

Ksenia: And how lucky Armenia is, and we are lucky! This is both a big task you carry and joy because you know exactly who you are.

Narine: Well, you know, I am calm about myself, there is no star quality in me. I got over it a long time ago. I was a young head of the department, very successful. There was such a moment — a woman head of the department!

I am always dissatisfied with myself. But I know who I am. That simple woman told me then... Sometimes angels manifest like this.

I believe that women will save the world. They are more flexible; they are not focused on themselves... Whether it's a department in a hospital or a country, we all perceive it as our home, we start to care about it. And not "to love oneself in art"!

Women will save the world; I believe in it.